Thursday, 25 October 2012

It's a weekday morning, still black outside. The radiators are just starting to send a shimmer through the cool air that has gathered in my bedroom overnight. The door creaks open and my daughter tiptoes in.

This is Grace, who never gets out of bed before me, who has to be three times awoken every morning, who snarls and groans when the curtains are opened. This is Grace, who pads around to my side and slips into bed beside me and says, I don't want to go to school today Mummy.

We slip together like spoons, huddled under the duvet in the grainy dark, and I put my arm around her and ask what's wrong. She says she has a sore throat, and fakes a cough. I tell her I think she'll be ok. She says she thinks not, that she really doesn't want to go to school. We talk a bit more. I listen and negotiate. I manage to get her out of bed and back into her room to put on her uniform.

Then I go to dress Betty, who pulls her pyjama top off her head with a soft plop and emerges laughing and looking windblown. Standing with her legs planted wide apart she presents me with her velvety round Cupid's belly, and commands me, twinkling, to kiss it. I oblige, inhaling her smell of camomile and milk and peaches. Then I button her into her jeans and pull soft blue socks over her perfect feet, the tiny pearly crescents of her toenails, which she wiggles in pleasure at the cottony yarn.

Then I go into Grace's room. My big girl is standing, undressed and frozen, in the middle of her room. Her eyes are huge and I notice the dark circles underneath them. Slowly, I approach her and dress her with the same tender care as my toddler. I button her shirt, knot her tie, help her with the uncomfortable business of school tights. I comb her hair back and secure it in a neat ponytail. I wipe her face with a flannel. Then, just under her cuffs, I spray a secret squirt of my perfume, a hidden comfort and physical reminder to her that I love her and will see her at the end of her day.

It's not enough, this time. She grabs my waist and starts to cry. Mummy, she sobs, I feel sick, I can't bear the thought of it, I don't want to go. Don't make me go. I make soothing shushing sounds and guide her downstairs, along the hall, to the kitchen table, from where Betty waves merrily at us. I get Grace a bowl and a cup and I pour her breakfast out. She needs to leave for school in ten minutes, if I am to have time to get ready and get to work myself. I keep my voice soft, and tell her she will be ok. Surreptitiously I check my blackberry and watch the clock. I tell her, just go for the morning and if it's still not ok, tell the teacher and I'll come and get you. I think about the work I have to do that day.

Grace eats a little and then stops. It's time to go. She puts on her coat and shoes while I fasten Betty's trainers and zip up her anorak. My husband opens the door and takes my little girl out to the car. In front of the open door Grace turns back to me in panic. She starts to shout and cry, louder and louder. Then she is shrieking and pulling at me. My husband, from the car, raises an eyebrow. I shake my head, and close the door, and hold Grace to me.

Then we go and sit down. Grace has got so big that she barely fits on my knee. She's all elbows and legs. I fold her up and tuck her into me and stroke her back. Then she starts to talk and I listen as she purges herself.

I'm really worried that I've got no friends, Grace says. I don't want to be the bad guy any more, but it's been so long and people are so nasty. The words they use, they make me feel spiky and slimy and I can't help myself and I can't stop the things that come out of my throat. I was so afraid to tell you. Her voice cracks with shame.

She talks on, about the boastful girl she put down, about the friend she doesn't want to have to play with because her games are so boring, about the classmate who whispered something to someone else that might have been about her and made her shout in her face in return, about the boy who she kicked when he baited her. She is mortified. They all hate me, she says. I was too ashamed to go in today.

A little while later I call work and explain that my daughter is ill and that I won't be in today. Then I call the school and make an appointment to take Grace in. We meet, her teacher, the special educational needs co-ordinator and Grace and me, in a little office overlooking the playground. Grace tells us that she thinks everyone hates her. She talks a lot about the last three years of school. Gently, we point out that it's a new year, that she's had seven weeks of term of which at least five have been good. We tell her that one or two bad weeks doesn't mean that everyone hates her. We use words like 'disagreement' and 'argument' instead of 'bullying' and 'teasing.' We suggest that if someone feels differently about things it doesn't mean that they're doing it to express a personal dislike of her. We suggest that Grace try to let go of previous hurts and allow herself to be optimistic. The SENCo is excellent: calm, affectionate and sensible. The headteacher stops by to give Grace a hug and tell her that everything will be ok. By the end of the session Grace ventures a cautious smile.

We drive home, and a song comes on the radio. It's cheesy R&B, the kind of thing I'd normally snap off immediately. But Grace turns it up and starts singing it to me. I listen to the words and smile and I sing it back to her. The words say: "Girl let me love you/And I will love you/Until you learn to love yourself." The windscreen blurs, and I switch on the wipers absently as I sing, until I realise it's my eyes that are blurring.

Wednesday, 17 October 2012

So once again, Asperger's Syndrome is in the news and the day after the day before, the world's media* seem to be putting all their least-qualified people out there to discuss it.

I can just imagine the phone calls between news editors when the story broke yesterday that Home Secretary Theresa May had blocked the extradition to the United States of Gary McKinnon, a British man with Asperger's Syndrome who hacked into Pentagon computers seeking to prove the existence of aliens, then spent ten years fighting not to be sent to an American prison for life.

The call will have gone up across newsrooms and television studios in the land:
Editor 1:"Quick, we need something on Asperger's Syndrome."
Editor 2: "Let's get X to do it."
Editor 3: "Does he know anything about Asperger's Syndrome?"
Editor 4: "Does it matter?"
pause
Editor 5: "I'll give him a call..."

Maybe I'm being harsh. But how else to explain the absolute blinders we've had today, from Matthew Wright on Channel 5 blithely proclaiming half-way through a phone-in: "I am horribly ignorant about Aspergers" (you didn't think, after yesterday's news, to do a spot of reading last night, Matthew?) to Jeremy Vine gravely intoning in tragic voice at the end of a Radio 2 discussion on Aspergers about "sufferers" of this "cruel syndrome." Eh? My daughter doesn't suffer from a cruel syndrome. She suffers from the lack of understanding and compassion of others. Even the sensible Independent newspaper ran a description of Aspergers which said it "disrupts something that is core to our being human." Pardon me? I don't think my daughter is less than human. But I suppose a discussion of cognitive versus emotional empathy in people with Aspergers would be too much to ask for..

Come on, I hear you say, you didn't really expect the media not to sensationalise this, did you? Especially when McKinnon's Aspergers was clearly presented as the reason not to extradite him. Well, maybe. But I don't believe (and maybe I'm reading this wrongly) that McKinnon's Aspergers was the reason he won his case. I believe he won his case because he was diagnosed with depression and that his diagnosis of Aspergers contributed to this, to his extreme anxiety that being sent to the United States would mean the death sentence for him, which in turn contributed to his depression, which fed the vicious circle in which the poor man has been bound for the last decade, resulting in him becoming extremely vulnerable. Thus the argument that being sent to the United States would contravene his human rights. Incidentally, I think there's also an argument that McKinnon's Aspergers diagnosis backs up his claim to have been looking for extraterrestrials during his hacking adventure, rather than seeking to expose U.S. military secrets. People with Aspergers have obsessive interests which they will follow to the nth degree, often unaware of how it may look to outsiders, and it is easy to understand that McKinnon, intrigued by what he thought was a lead on aliens, would have followed it wherever it went, regardless of big red signs about national security. Though that would have been one for a trial defence, which clearly he doesn't need now. Though interestingly, another British man who has Aspergers, who goes by the name of Syed Talha Ahsan, does need a defence case after he was extradited earlier this month to America on terrorism charges, regardless of a similar psychiatrist report that he was also a suicide risk. Which throws up a whole other series of questions.

But in McKinnon's case there have been two very disappointing conclusions drawn by the media. One is that he "got off" because he is disabled - to whit, he has Aspergers, and is clearly not in his right mind. (There were worrying ripples of this when it was mooted that Norwegian mass killer Anders Breivik might have Aspergers: the overwhelming response seemed to be "oh well that explains it.") The other is that Aspergers defines the individual to the extent that there is no room for anything else. We have seen this happen increasingly as the discussion about autism and Aspergers widens. I am glad the conversation is taking off and relieved to have seen this happen in recent months, but it is tooth-grindingly frustrating in the plod towards greater awareness to have to go through this dense dramatising first, these black and white, unsophisticated pronouncements. "Oyez, Oyez, Asperger people have a VERY SERIOUS ILLNESS and are VERY WEIRD AND DIFFERENT. And, by the way, THEY ARE ALL THE SAME.

No, no, a thousand times no. We are glad, o Gods of the telly and newspapers, that finally you're talking about a condition which is exploding among the global population and which, frankly, you're already way behind on. Rain Man was made in 1988, don't you know. But come on, folks, you've been given a fantastic opportunity here to explore what autism and Aspergers means and judging by today's coverage, you've fluffed it.

People with Aspergers are different, yes. Weird? Well, how do you want to qualify that? They're no more or less weird than the rest of us -- you, who loves Zumba so much you go to classes five times a week, or you, who loves those Star Trek films so much you watch them back to back, or you, who love gardening so much you've filled your entire garden with that particular plant, or you, who have that favourite chair to watch TV in and feel a bit out of sorts when the wife gets it ...

The truth is, autism is a spectrum condition. I think we are all on that spectrum. In the UK it is estimated that 1 in 100 people have autism, so most of us either know or love or look after someone with autism. (If you don't know anyone then maybe, just maybe, it could be you.) People with Aspergers are on that spectrum. Some characteristics of Aspergers are the same. Many, many are very different. Ask a group of parents of children with Aspergers about their experiences and they will all tell you different stories. And different permutations of the diagnosis are coming through. Just as we start to talk more widely about autism, so we have more related behaviours to discuss. PDA: Pathological Demand Avoidance Syndrome, anybody? How about PDD-NOS: Pervasive Developmental Disorder Not Otherwise Specified?

I'd love to come to a neat conclusion for you all here. God dammit, I'd love to come to a neat conclusion for myself here. (It is after all, what I'm trained to do, and the last few years floundering about hasn't been much fun.) But the truth is, there isn't one. I'm no expert in this. I've lived three years with my daughter's diagnosis and in that time I've learned a lot. I've also learned how little I still know. It's an attitude I'd recommend to anyone planning to write or talk about this subject any time soon.

*disclaimer: I work as a journalist. but sadly no-one asked me to write about Asperger's today.

If you would like to help me raise awareness of autism, please click hereIf you would like to read our book, please click here

Monday, 1 October 2012

"So when exactly was it, when you felt like killing yourself?" said the journalist at the other end of the phone last week. "And that episode when you're crying in the shower, when was that?"

Hum.

A confession: I was never much one for confessions. A lot of confessional journalism is fabulous, searing, inspirational. Some of it opens eyes and breaks down prejudice. Some of it is self-indulgent.

I never said I wouldn't do it: I just didn't think I'd ever have anything that important to speak up about.

But then my daughter - my precious darling big girl, the grace of my heart and so-named - was diagnosed with Asperger's Syndrome, and our world changed.

I felt lonely and confused. Grace felt lonely and confused. I was angry a lot of the time. So was she. She would come home alight with tension after a day of trying to process a world that couldn't make room for her and I would watch helpless from the sidelines as she went off into another meltdown, fizzing and jittering and shrieking like a Catherine wheel. I felt burdened by a huge responsibility and clueless about how to help.

One thing Grace would say again and again was: "Why doesn't anyone understand?" Then she started to say: "I'm so stupid and useless."

So I thought I would see if I could find a way to help other people understand and in the process make my daughter feel better about herself. By then I was noting down my thoughts daily, in a scrappy journal, in a barely-readable scrawl, as I travelled to work by tube. I thought if I could scribble down all my jumbled, jangled responses to the situation in which Grace and I found ourselves, then somehow a way ahead would reveal itself. Then I thought: why don't I just write it all out and ask other people to read it, and see what they think.

I said to Grace: "I'm thinking of starting a blog, to tell people what it's like to have Asperger's."

She brightened immediately. "Yes!" she said. "I want people to know what it's like. Please will you tell them?"

So I started. Grace read every entry. She talked openly about how she felt and was honest when things were bad, when school went wrong again and friendships failed. Sometimes she would read an entry and ask why I was feeling the way I was. We talked a lot about emotions and she learned along the way. (Contrary to popular opinion, my Aspergers daughter is highly sensitive about how other people are feeling and is agonisingly empathetic. She just struggles to interpret emotions in the moment.) Sometimes I would ask her whether it was ok to write about something particularly painful. There was a lot of stuff I didn't write down.

There were some very tough times. When they came around, I thought I should be honest about them. In so doing I've been told by many other parents of autistic children that it's a relief to see someone telling the brutal truth about the downs. There is so much pressure to be relentlessly optimistic that when the outlook seems bleak it can seem a betrayal to be honest about it.

But this was never meant to be a sob story. My daughter's life is not a tragedy. When I read the doleful medical reports, the diagnosis, the regular assessments, I would think: whose child is this? My Grace sparkles and entrances, and holds any room in the palm of her hand. I wanted to show people that she is not defined by her Aspergers. It is who she is in the same way that she has brown eyes and long, long legs and a delicious expression of mischief that always betrays her ahead of a prank. (I hope she never loses it.)

We've both grown in confidence since I started blogging. Grace has full time help in school now, after our a long battle with the authorities to get a statement of educational needs. These days she comes through the school gates beaming and telling me she's had a great day. She's winning gold stars and trophies. And she's looking forward to going to secondary school. Meanwhile I ran the London Marathon this year, wearing the National Autistic Society's vest and on Sunday I'll run the Royal Parks half-marathon for the second time as part of the NAS team. In the last year I've raised just over £6,000. And I've built up my mental strength as well as my muscles.

I wouldn't quite call it a happy ending - we both know the road ahead is likely to have many more bumps - but life today feels good.

Grace is excited and proud to be in the Guardian and the Times newspapers. When we received the first deliveries of our book, which is published this week, she picked it up and turned it over and over with an expression of wonder. I said to her: "Shall I stop writing the blog now? I think maybe it's time that you had some adventures in private." She turned to me in alarm and said: "No! Please don't. It helps me tell people what it's like."

So for now I'll keep blogging. There is still plenty to say. I think and hope the next year will be more positive. I still have worries about my daughter. I fret about the challenges of adolescence and the next stage of her education. I fret about the lack of official support, from the government's plans for SEN reform, to Michael Gove's plans to change the examination system.

But now I know I have a voice and I hope that I can make a difference. And now I know I can run, and get through the difficulties. And I know that now and always I can take my lead from my daughter, whose courage and dignity and warmth is inspirational.

Gracie, my darling pet, thank you. I love you.

If you would like to support me on Sunday's run, and help me raise awareness of autism, please click here

About Me

Mother, marathoner, campaigner: I started this blog with my elder daughter when she was diagnosed with Asperger's Syndrome and both of us were struggling to find support. I wanted to give Grace a voice and show the courage and humour with which she overcame challenges. I also wanted to raise awareness about autism, and to that same end, started long-distance running in support of two autism charities.
I also campaign for diversity and inclusivity as leader of the Women's Equality Party, which is a new non-partisan force in British politics uniting people of diverse ages, backgrounds, ethnicities, beliefs and experiences in the shared determination to see women enjoy the same rights and opportunities as men so that all can flourish.